Epilepsy Foundation Iowa - Guest Article

The Epilepsy Foundation is the leading national voluntary health organization that speaks on behalf of the at least 3.4 million Americans with epilepsy and seizures. Our local chapter, Epilepsy Foundation Iowa, advocates and provides services in all 99 counties for the approximately 31,400 Iowans living with epilepsy and seizures. Together, we foster the well-being of children and adults affected by seizures through research programs, educational activities, advocacy and direct services.

Epilepsy is a medical condition characterized by seizures, which are sudden electrical surges in the brain, that affects a variety of mental and physical functions. Approximately one in 26 Americans will develop epilepsy at some point in their lifetime. There is no "one size fits all” treatment for epilepsy, and about a third of people living with epilepsy suffer from uncontrolled or intractable seizures, with many more living with significant side effects, despite available treatments. Uncontrolled seizures can lead to disability, injury and even death. The Epilepsy Foundation is committed to supporting physician-directed care and to exploring and advocating for all potential treatment options for epilepsy. People with uncontrolled seizures live with the continual risk of serious injuries and loss of life.

In addition to advocacy, Epilepsy Foundation Iowa provides information and referral to resources to help overcome challenges and improve quality of life. We offer a variety of educational training programs on seizure recognition and first aid to help people better understand how to respond to epilepsy in their profession. Trainings are for school personnel, school nurses, students, daycare providers, law enforcement, first responders, senior caregivers, direct support personnel, transportation drivers, civic organizations and more. We also organize and host our annual Iowa Seizure Smart Conference, which is an epilepsy education conference with epilepsy experts who speak on a variety of topics that impact people with epilepsy. The event features an exhibitor resource fair, a children’s education session and networking groups. Our work also includes holding Epilepsy Empowerment Group meetings in Des Moines, Cedar Rapids and Iowa City to provide education and support to families impacted by epilepsy and their caregivers. Additionally, we have epilepsy youth camp scholarships for youth to attend an epilepsy camp of their choice and a Kids Crew program to help raise awareness, educate others, share stories about epilepsy and join in events. We also hold our Walk to END EPILEPSY events in the spring in West Des Moines, Waterloo and Iowa City.

To learn more about the Epilepsy Foundation Iowa programs, services and upcoming events, go to www.epilepsyiowa.org or follow us on social media. Our National Epilepsy Foundation website at www.epilepsy.com provides credible information about epilepsy authored by medical professionals. You can connect with the executive director or Eastern Iowa program coordinator by calling 515-282-3580 or emailing Iowa@efa.org.

Visit http://advocacy.epilepsy.com/ to learn about the Epilepsy Foundation’s policy priorities and read about advocacy news. Once you’re there you can also join our “Speak Up Speak Out” advocacy network to help us raise awareness with public officials about the public policy issues important to the epilepsy community.

2019 MAKE YOUR MARK! CONFERENCE: LEADING THE WAY

Join us for the 2019 Make Your Mark! Conference. Sessions this year are focused on developing your leadership skills.

We are excited to offer FREE registration for individuals with disabilities, family members and direct care support professionals accompanying a participant. Attendance will be limited to the first 150 people to register, so don't wait!

Featured Speakers:

“I said, ‘Somebody should do something about that.’ Then I realized I am somebody.” — Lily Tomlin

Lily Tomlin isn’t just a very funny lady. She is wise. The world we live in is wonderful … most of the time! Each of us has beliefs, values, issues, that are most important to us. “Someone” needs to make sure those things that are working well continue on.

Attention: Exhibitors! We have started planning for our 2019 Make Your Mark! Conference taking place in Coralville, Iowa. The Iowans with Disabilities in Action Make Your Mark! Conference is targeted at Iowans with disabilities who want to be more involved in advocacy at a local, state or federal level. While we anticipate parents and family members, caregivers and direct support staff, service providers and others affected by disability will attend the conference, the primary target audience is Iowans with disabilities.

Here are a few reasons why you should choose to exhibit with us: Connect with more than 150 individuals with disabilities, direct service providers and family members. You will be listed in the conference program and on the registration website. One complimentary registration and one discounted registration will be included. You will be visited by attendees during four 30-minute exhibit breaks, and you will have an hour and a half of exhibition time during registration.

Here are the exhibit booth costs: $75 for a self-employed individual with a disability, $175 for a nonprofit organization and $300 for a for-profit organization.

Interested in being a sponsor? We offer a variety of sponsorship opportunities, all of which include exhibit space. Sponsorship packages range from $1,000-$4,500 and include the following (depending upon price level of sponsorship package): Two complimentary conference registrations, recognition as a kickoff reception sponsor, linked logo on all e-communications and more.

Registration is open now. Visit www.idaction.org for more information. Limited exhibitor space is available.

DD COUNCIL MEMBER SPOTLIGHT // NEW COUNCIL MEMBER — ROB ROOZEBOOM

The Iowa Developmental Disabilities Council is a federally funded state agency that advocates for the creation of services and supports that allow Iowans with developmental disabilities to make choices, take greater control of their lives, exercise their rights as citizens and participate fully in society. Council members and staff participate in forums, on committees and in work groups. They also develop written materials and responses, meet with legislators and collaborate with other organizations to create positive results for Iowans with disabilities. One of those Council members is Rob Roozeboom.

Roozeboom lives in Sheldon, Iowa, with his wife, Sharla, who is a kindergarten teacher. They have three kids: a son, Jager (16), and two daughters, Riley (14) and Aidan (12).

Roozeboom started a nonprofit 18 years ago called RISE Ministries. Under RISE Ministries, Roozeboom hosts a Christian music festival in Sheldon each summer called RiseFest, where 16,000 festival-goers come together over two days from all over the U.S. Roozeboom states, “I love to travel, go boating, help any way I can on the farm, spend time with my family and do lots of other things. I’m 43 years old and live with limb-girdle muscular dystrophy, so from a physical perspective I understand the challenges of a disability. I was diagnosed at five and have watched it progress throughout the years. Currently, it is incurable.” Roozeboom shares, “I chose the DD Council because it’s what I have the most experience in —living with a progressive, incurable disease. I’m excited to be a DD Council member because for the last 20 years I’ve wanted to make a difference in the lives of others, and I’m sure hoping by serving on this council I’ll be able to do that!”

TAKE YOUR LEGISLATOR TO WORK CAMPAIGN

October is National Disability Employment Awareness Month and throughout the month, Iowans with Disabilities in Action will conduct the Take your Legislator to Work campaign. This campaign intends to increase awareness that every Iowan with or without a disability should have opportunities and choices to have meaningful employment in the community.

Iowans with Disabilities in Action is interested in working with people with disabilities who would like to take their legislator to work. The visit will typically last 30-45 minutes. It is your opportunity to share with your legislator(s) what you do at work and why it is important in your life.

Who can participate:

This campaign is open to any Iowan with a disability who is working in any type of employment. Before you decide to participate, ask yourself two very important questions:

Do I have great things to say about my job and the impact it has on my life?

Do I have a message I want to share with my legislator(s)?

If you can answer yes to both questions, then you should consider participating in the Take Your Legislator to Work campaign.

How it works:

The campaign will take place throughout October. To get started, go to the Iowans with Disabilities in Action website www.idaction.org and download the information form. Send the form back to us by September 12 and we can help you to get started. You will be responsible for talking with your employer to get approval, determining the best times for a visit and contacting your legislator to invite them to participate.

Iowans with Disabilities in Action will provide you with assistance throughout this process.

If you have any questions, please contact us at 866-432-2846 or contactus@idaction.org.

AMERIGROUP – Supports Self-Advocacy

Want to learn how to speak up for yourself? Learn about keeping a job? Know more about your rights as a person with disabilities? There are organizations in Iowa that coach people with disabilities on how to live a full, independent life. Amerigroup offers their eligible members some money every year to use to attend a conference or event sponsored by:

Iowans with Disabilities in Action

NAMI-Iowa

Area Agencies on Aging

Autism Society of Iowa

You can also get a yearly membership in one of these advocacy groups:

National Council on Independent Living

TASH

Self-Advocates Becoming Empowered

Who is eligible?

Amerigroup members in one of these waiver programs, with approval from your care manager:

Brain injury

Health and disability

Intellectual disability

Physical disability

How to get your self-advocacy membership:

Call Member Services and ask to join the group you want: 800-600-4441.

Look for information from Iowa Total Care about their programs coming in the next issue.

This project was supported, in part by grant number 1801ABSDD, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy.